1. National Hospice and Palliative Care Organization’s Palliative Care Resource Series
PALLIATIVE CARE FOR HEART FAILURE PATIENTS: PRACTICAL TIPS FOR HOME BASED PROGRAMS
Parag Bharadwaj, MD
Anjali Chandra, MD
Donna Stevens, BS
Ernst R. Schwarz, MD, PhD

2. INTRODUCTION
More than 5 million people suffer from heart failure (HF) in the US
Half the people who develop HF die within 5 years of diagnosis
HF has a high symptom burden
Palliative care intervention provides comfort and optimization of treatment plan and goals

3. OVERVIEW HF Palliative Care in HF Patients at Home Definition
Pathophysiology
Clinical Features
Disease Management
Palliative Care in HF Patients at Home

4. DEFINITION OF HEART FAILURE
HF is a pathophysiologic condition in which the efficiency of the myocardium is reduced through damage and overloading, resulting in decreased cardiac output (CO) and circulatory failure
Characterized by recurrent decompensation and persistent symptoms

5. RELEVANT PATHOPHYSIOLOGY
Heart fails to pump adequate blood to meet the requirements of the metabolizing tissues
Types
Systolic HF
Impaired contractile function of the heart with reduced ejection fraction (EF)
EF < 40% might indicate systolic HF
Diastolic HF
Impaired ventricular filling during relaxation phase
Normal EF of 55 – 60%

6. CLINICAL FEATURES Predominant Symptoms Shortness of Breath
Exceptional Dyspnea
Orthopnea
Paroxysmal Nocturnal Dyspnea
Acute Pulmonary Edema
Pain around the chest and other parts of the body is under diagnosed

7. CLINICAL FEATURES Other Common Signs and Symptoms: Fatigue Weakness
Weight Gain
Nausea and Bloating
Sexual Dysfunction
Insomnia
Lack of Concentration
Cognitive Decline
Memory Loss
Muscle Wasting
Cachexia

8. DISEASE MANAGEMENT Non-Pharmacological Interventions Exercise Diet
Sodium Restriction
Fluid Restriction
Nutrition

9. DISEASE MANAGEMENT Pharmacological Interventions Diuretics Vasodilator
Inotropes
Beta Adrenergic Receptor Blockers
Angiotensin-Converting Enzyme Inhibitors (ACEIs)
Angiotensin II Receptor Blockers (ARBs)
Supplemental Oxygen

10. DISEASE MANAGEMENT Invasive Strategies
Electrophysiologic Intervention Devices: CRT and pacemakers
Ventricular Assist Device (VAD)
Revascularization Procedures: CABG and PCI
Valvular Surgery: valve replacement or repair, ventricular restoration

11. PALLIATIVE CARE FOR HF PATIENTS AT HOME
Meeting the patients’ needs at home lessens the patient and caregiver burden and prevents avoidable hospital admissions
Delivery of this type of care requires intense planning and care coordination between all involved medical specialties and additional support
Team involved includes Palliative Care, Primary Care, Cardiology, as well as some additional community partners such as Home Care, Parish Nurses and Area Agency on Aging

12. CLINICAL: AREAS OF FOCUS
Vital Signs, with special attention to:
Oxygen Saturation
5th vital sign - pain
Physical Exam
Labored Breathing
Fluid Overload
Jugular Venous Distention (JVD)
Auscultation of Lungs: Crackles
Pedal Edema

13. CLINICAL: AREAS OF FOCUS
Weight and Fluid Input/Output
Weight Gain – Fluid Overload
Input should be less than output
Insensible Water Loss: 600 – 900ml/day
Functional Status (use one tool consistently)
Suggest Palliative Performance Scale (PPS)
Monitor for change – fluid overload, progression of disease
Prognostic implications

14. CLINICAL: AREAS OF FOCUS
Screening for Symptoms (use one tool consistently)
Suggest Edmonton Symptom Assessment Scale (ESAS)
Medication Reconciliation
Assess ability to manage medications
Ensure understanding, purpose and importance of each medication
Ensure adequate supply of medication to optimize compliance

15. CLINICAL: AREAS OF FOCUS
Hardware Check (pacemakers, ICDs)
Relevance of the devices in relation to goals needs to be revisited on a regular basis
Intravenous Inotrope Infusions
Requires higher level of maintenance
Fixed dose, usually not titrated

16. CLINICAL: AREAS OF FOCUS
VADs and Post Transplant Patients
Experienced multi-disciplinary team must be involved in management
Protocols placed in advance, including turning off the device at home
Review of Records
Essential to know baseline of clinical parameters in order to identify significant changes

17. CLINICAL: AREAS OF FOCUS
Any changes in the areas of focus will require a more thorough assessment to determine changes needed in the home regimen or to escalate care to the next level, such as setting up an appointment with the cardiologist or transfer to the hospital
All changes should be implemented in collaboration with the HF service

18. ADDITIONAL NEEDS ASSESSMENT: AREAS OF FOCUS
Emotional and Financial Support Screening
Request social worker follow-up, if needed, in addition to routine social worker visits
Spiritual Needs Screening
Request chaplain visit, if needed, in addition to routine chaplain visits
Caregiver Screening
Ensure social worker and chaplain support to caregiver(s)
Monitor for burnout

19. PATIENT GOALS: AREAS OF FOCUS
Care plan and patient goals should be reviewed frequently with the patient and caregiver to ensure the appropriate care is being delivered
Every patient should have an advance directive completed, preferably a POLST (Physician Orders for Life Sustaining Treatment)
Any changes should be promptly reflected in the document
Documents should be readily available to patient, caregiver and paramedics (if called)

20. PATIENT GOALS: AREAS OF FOCUS
Depending on the patient’s clinical status, options and goals should be readdressed on a regular basis
Informing the patient and the caregiver of options, including hospice, is necessary

21. REVIEW AND EDUCATION: AREAS OF FOCUS
Any changes in the treatment plan should be given to the patient and caregiver in writing and reviewed with them during the visit
Before leaving the patients’ residence, patients and/or caregivers should be instructed to call the palliative care service with any questions or concerns. A back-up plan must be in place when the service is not available.
Ideally, a call to the primary physician/cardiologist should be made from the patient’s home during every visit and the plan of care should be reviewed

22. OPERATIONAL Outline scope of practice of each team member
Optimization of care requires team function as one unit with team members being able to rely on each other
Routine Interdisciplinary Team (IDT) meetings are essential

23. OPERATIONAL Role delineation is vital
Meet with primary care colleagues and the cardiology team to establish parameters
Strong relationship with cardiology and primary care is essential
Involve all specialties during regular patient care meetings
Operational communication is vital for discussing changes such as protocols and practice personnel

24. OPERATIONAL Emergency strategy needs to be set up
Off-work hours plan needs to be in place if your service is not 24/7
Clinical and operational data, patient/family satisfaction and referring entity satisfaction should be collected and reviewed routinely
Additional support from cardiology is essential if palliative care becomes involved with VAD patients

25. OPERATIONAL Expected Outcomes Improved continuity and quality of care
Decrease in ER visits and hospitalizations
Increased adherence to patient goals
Improved patient and provider satisfaction

26. SUMMARY: LESSONS LEARNED AND BEST PRACTICES
A well-coordinated team is required, preferably with a shared electronic medical record
Frequent team meetings allow other insights and techniques; each home setting is unique and requires attention and respect for the environment
Focus should be on keeping the patient comfortable and meeting patient/family goals, versus just avoiding hospitalizations. Some hospitalizations may be appropriate

27. SUMMARY: LESSONS LEARNED AND BEST PRACTICES
Prevention and preventative plans are vital
Home is where the heart is; figuring out how to eliminate obstacles for patients is part of the terrain
Social interactions and being able to give to others in some way is good medicine

28. SUMMARY: LESSONS LEARNED AND BEST PRACTICES
An office nurse coordinator who will work with the palliative care provider(s) and triage phone calls, provide clinical input, assist with care coordination and manage referrals maximizes the providers’ time
Relationships develop in a different way when in the home; resiliency and self-care must be part of this work